Hormones suck and insurance companies suck more

January 25, 2013

I want to cry.  I am not sad or upset, but I want to cry.   That’s the beauty of having a prescribed hormone yanked away.

When I wrote this post a week ago, I figured the med would be approved eventually, so I’d just have one unpleasant month.  PrescriptionAs it turns out, the insurance company denied it completely.  I’ll need to appeal.  Or try another med.  Never mind that I’ve been on this one for EIGHT YEARS!  Never mind that my DOCTOR prescribed it because he felt it was the best option for me.  Nope, the insurance is deciding this one.

Memory is a funny thing, especially when you have cognitive and memory problems.  I know I’ve been off the med for brief times before, and I remember that it made me emotional, but I didn’t remember it being this particular level of hell.  For the last 24 hours, I’ve been a wreck at times and I’ve felt fine at times.  When I feel fine, I figure the other stuff was a fluke.  Then I’m a wreck again and I know that I need to find another solution.  I can’t just wait to see if my body normalizes over time.  (We tried that once.  It didn’t.)

I’ve been really anxious.  And I’ve been obsessing.  Last week, before the hormone change kicked in, I sent a text to the guy I’m sleeping with.  He didn’t answer right away.  I thought about him occasionally, had some nice sex fantasies, and assumed he was busy and would get back to me later.  Then I moved on and did other things.  Yesterday the hormone stuff started, and it was much earlier than I expected.  I sent him an email yesterday and he didn’t respond right away.  I started wondering if he didn’t like me anymore (even though we sent flirty messages earlier in the day and made a date for next week.)  Then I started thinking he was intentionally ignoring me.  He’s avoiding me.  He’s going to ditch me and that’s why he’s not answering.  He’s sick of dealing with me.

Ok, I know how ridiculous that sounds.  Even while I thought it, I knew it was ridiculous.  And yet, I couldn’t stop thinking it.  And I kept thinking about it.  Even when I tried to do other things, I kept thinking about it.  Every time I had an email or a text message, I wondered if it was him.  That’s not normal.  That’s not me.  I don’t usually obsess like this.  And I’m pretty sure that next week I won’t be obsessing and anxious and weepy.  But right now I am.  Right now I’m crying because I got a call about scheduling an appeal hearing for state medicaid, and I couldn’t thinking clearly enough to make an important decision (because of this mess with the medication,) and I started crying.  Again, that’s not me.

There are a lot of good reasons to stop taking a prescription.  I can think of many.  And they all involve choices being made by the patient and the doctor based on what’s best for the health of the patient.  None of them involve money or insurance companies, and yet that’s how my decision is being made right now.  This is just plain wrong.  I’d like to call the insurance company and tell them that, but when I called before, I started crying.  The irony.

So I’m legitimately angry, pissed off, furious.  That’s my normal response, and I’ll happily embrace it.  As for the rest, I’m hoping it goes away soon, so I can go back to feeling like myself.  I miss me.

4 Comments | Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The doctor-medication-insurance run-around

January 18, 2013

I have been trying to refill my prescription for more than 3 weeks, and now I won’t have it when I need it, by Tuesday.

I have been on this prescription for a long time, around 7 or 8 years, and it works.  It’s a hormone, and it’s not a life-saving Prescriptiondrug, but it sure does make my life better, especially for several days a month.  For various reasons, I went off of this drug twice in recent years, and each time, I had bad PMS symptoms.  The moodiness was really horrible.  Plus I didn’t get a period.  It’s obvious my body reacts better when I am on this drug.

When I started this drug, my insurance covered it with a $40 copay.  Later, it was covered with a $10 copay.  Now, it may or may not be covered.  They haven’t decided yet.

The process started a few weeks back when I called the pharmacy.  I was out of refills.  They called the doctor.  I called the doctor.  The doctor sent the refill.  Then the insurance company told the pharmacy that they needed prior authorization from the doctor.  The pharmacy then contacted the doctor’s office.  They were closed for the week of Christmas and new year’s.  It’s a small office, just the doctor and one staff member, but I was still annoyed.  Next, the administrative staff member tried to send in the authorization, but there was confusion about the insurance, so she called me.  I had forgotten to tell them about my new insurance.  Oops.  Ok, that was totally my fault.  I scanned a copy of my new insurance card and emailed it to her.  She told me she received it and would take care of everything.  More than a week went by and I didn’t hear from the pharmacy, who was supposed to call.  So I called them.  I assumed everything had gone through and they had just forgotten to send the order.  Nope.  It turns out, the paperwork from the doctor’s office didn’t go through.  They contacted the doctor’s office and the paperwork was sent.  I got a call from the pharmacy that the insurance company was processing it and that it can take up to three days.  Then today I got another call that it might not go through.  I asked how much it would cost out of pocket.  I figured I could pay $30 or $40 if I had to.  It’s $104.  Hmm, not in the budget.  I called the insurance company.  They told me to call the company that handles their prescriptions.  Those folks told me it was still being processed.  Apparently, they need the doctor to explain why he is prescribing this particular drug, instead of having me take something else.  They called his office, and were told to call back on Tuesday.

I need the new prescription by the noon dose on Tuesday.  Let’s say the doctor gets back to the insurance company on Tuesday and actually satisfies their questions.  Let’s say the insurance processes things quickly and sends approval to the pharmacy on Wednesday.  The pharmacy is quick, and could probably send it out on Thursday.  That means I could receive it by UPS on Friday.  3 days too late.  And that’s if they move quickly.  That’s if they even approve it at all.  I won’t take a different drug, not with the kinds of side affects I’ve had in the past.  But then, what choice will I have?

So it looks like 1 month wasn’t enough time to refill this prescription.  And I found the flaw in my supposedly-great health insurance.  It could be a rough month.  As the time approaches, I’ll have to warn my friends about my likely upcoming moodiness.  And that will be around the time I expect to hear about the disability insurance appeal, so I’ll be on edge anyway.

There are many, many ways that the system lets us down, that it seems to put the needs of the patients last, that it makes an already bad situation even worse.  This is just the one I’m dealing with today.  By tomorrow, I’m sure I’ll be dealing with another.

4 Comments | Educating, Expectations, Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

Celebrating a less-bad lab result

January 10, 2013

I just got a test result back and it was only a bit over 10 times higher than it should be!  Yay!

My guess is that most “healthy” people don’t understand why this is cause for celebration.  From my interactions, it seems that their world consists of healthy or not healthy and nothing in between.  But for those of us with chronic illnesses, there’s a huge spectrum, and I’m thrilled to be moving along mine in the right direction.

I got diagnosed with an autoimmune condition at age 23.  My hypothyroid diagnosis came at age 25.  After a lot of research, now I know that many hypothyroid cases are autoimmune and people should be tested for that, but that someone with a history of autoimmune disease should definitely be for Hashimoto’s Disease, which is an autoimmune thyroid condition.  Unfortunately, I only did this research in the last year, and none of my doctors thought to test me for thyroid antibodies until I was 31.  Yep, it took six years for anyone to think of testing me for something that was incredibly likely.  That’s just another in the long list of errors made by my doctors.

Anyway, the point is that they did finally run the test.  On a “normal” scale of 0-35, my score was over 400.  Not good.  The next year it was over 600.  Even worse.  My doctor told me that the only treatment was the pill that I was currently taking, but through my own research I determined that wasn’t the case.  I went on a gluten-free diet.  I started seeing a naturopath.  I made more dietary changes.  I began taking supplements.  I did whatever I felt was right to fix my body.

For a long time, none of my doctors tested my thyroid antibody levels.  Why bother, when there was nothing they could do anyway?  But at my (and my naturopath’s) request, a doctor ran the test last month.  I got the results this week: on a scale of 0-35 my level was 375!  Wow!

The real question is, what does this number really mean?  After all, it’s just a number, just a lab test.  This doesn’t change how I feel.  I feel the same today as I did last week, before getting the result.  But now I know that the hard work, the experimenting, the huge expenses, are all worth it.  Because of all of that, I’m heading in the right direction.  I knew this, of course, because I was feeling better, but there was the nagging worry that maybe my feeling better was the result of a placebo affect, or maybe it was only a random, temporary blip that wouldn’t last much longer.  Of course, these things could still be true, but now it also looks like I’m getting better.  I may never get those antibodies into the “normal” range, but the closer they are, the better I should be feeling.

So for only having my thyroid antibodies at a ridiculously high level, instead of a super ridiculously high level, I’m CELEBRATING!!!

2 Comments | Educating, Expectations, Healthcare, Milestones, Raves | Permalink
Posted by chronicrants

“A great doc, but you didn’t hear it from me”

December 6, 2012

Our medical system is seriously fucked up.  I’m sure this isn’t news to you (and if it is, you can start learning about it here and here.)  Now, I know that some parts of it work well.  I used my new health insurance for the first time today, and that was great.  But in so many other ways, it just doesn’t make any sense at all.

What do you think is the point of healthcare?  Personally, I think it is to maintain good health, and to achieve improved health when needed.  Unfortunately, healthcare here is a business, so to the people in control, it’s about making money.

I saw my rheumatologist today, and of course at one point we talked about how I need a new endocrinologist since my old one dumped me.  He didn’t like that I require so many expensive tests, so much effort, and so much insurance-related paperwork.  I asked my rheumatologist for her advice.  She confided in me that there were a few in her hospital system that I should stay away from, and she asked me not to tell anyone that she’d said that.  Ok, I get that.  She shouldn’t bad-mouth colleagues.  No problem.  I would never say a word.  No one should bad-mouth a colleague – it’s bad etiquette – but when it’s a matter of someone’s health, it’s worth it.  All good, right?

But then she considered things, and finally told me about a center at another hospital that specializes in thyroid work, which is what I need.  She said multiple times “but you didn’t hear it from me,” and I assured her that I would never let on.  If I thought that writing this would in any way haunt her, I’d never write a word of it.  The last thing I want is to hurt someone who has fought on my behalf many times, helped me immensely, and gone above and beyond.

So here’s why I’m upset: why should a doctor get in trouble for telling a patient about a treatment center that could help them?!?  Think about that.  She would get in trouble because she suggested that I go to a different hospital.  She is not telling me that her hospital sucks.  She is not telling me to leave her practice.  She is not treating me badly. On the contrary, her primary concern is my health, and for that reason she is suggesting that I see the practitioners who are most likely to help me improve my health.  Once again, her focus is on my health!

And that’s why our system is completely fucked up.  Because a doctor can get in trouble for helping a patient improve their health, if it means sending the patient (and therefore the patient’s money) to another center.  Wrong wrong wrong.

So while we’re at it, PLEASE let me know if you can recommend a good endocrinologist in the Boston area.  I will consider my rheumatologist’s suggestion, but I don’t know yet if that place will offer what I need, or if they’re taking new patients.  Please send any and all suggestions.  I need someone who does thyroid work, especially Hashimoto’s.  Thanks!

Leave a Comment » | Educating, Frustration, Healthcare, Kindness, Limitations, Rants, Thoughtfulness | Permalink
Posted by chronicrants

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